I was diagnosed with atypical ductal hypertrophy (form of pre-cancer) in my right breast and following lumpectomy LCIS. Based on my personal and family history I have a 35% risk of developing either DCIS/LCIS, or invasive forms, in either breast. I do not have BRCA mutations but have two associated mutations (near to BRCA) with one, FUNCJ-BRIP, thought to be related to BC. There is not enough data yet - and that means my risk could go up or down in the future.

35% is ten times higher than average of 3%. So to me 3%, even 1%, is a good deal! Funny how the same percentage evokes different responses in us all...

As I understand it, my risk of 35 would mean 3.5 (say 4) women out of ten would get cancer... and 6 would not. But will I be one of the 6 or one of the four? Will BRIP elevate my risk? How long until we know...and how high might the risk go if BRIP is implicated in BC? If the risk went up to 50, that's 50/50 chance of developing BC - a flip of the coin! So is the glass half full or half empty? I am an optimist and would generally see the glass as half full - but for BC I don't want to gamble that I would be one of the lucky six. We all have to chose what risk we are willing to accept.

I was presented with multiple options to move forward with treatment including chemo-prevention, 6 month high risk screening, or a prophylactic bilateral mastectomy. I am 63 with a distant family history of BC (second and third cousins who died in 30's others 70-80s) but other than that long lives on both sides. I could be here an awfully long time! So I elected the prophylactic bilateral mastectomy. I don't want to have the anxiety of screening (and the waiting!) every six months, or long term chemo even if it is at low dosage - or after choosing either of these treatments being diagnosed with cancer later in life. I rationalized that if I dramatically reduce my risk now I will be able to recover more quickly and lead a higher quality of life for however long that might be. Sure, I would probably be disappointed to learn in the future (through some miraculous new technology) that I would have been one of the lucky six - reduction of pain and suffering is a good thing but at the same time I can only act in my best interest with what is known today. I might not be all that disappointed too; life is journey and my decision will likely yield growth or other benefits that are not seen now. It will shape me somehow; literally and figuratively!

I have my PBMX on July 9th. I have a little anxiety - but most is surrounding the waiting that will follow the procedure. I'm worried that the path might show an invasive form of ductal or lobular that was not detected in most recent mammography. It's a waiting game - but in any case, I will have greatly reduced my risk by removing my breast tissue. BTW everything I have read on lowering risk through mastectomy has said that not all the cells can be removed and this is why we have a continued, but low, risk of BC. I learned from my breast surgeon early this week that when they remove the breast they conserve some of the breast tissue to maintain blood supply to the skin - otherwise your skin would die on your chest. This makes sense but I don't understand why the literature/websites, etc aren't more transparent. When they say all the cells can't be removed we are all probably thinking the cells are very small and can be overlooked. I was surprised to learn they are actually intentionally preserved. Made me waiver for a moment - but then I thought 35 or 3%...pick your poison!